He Never Looked Back

In our state, Early Intervention services stop on a child’s 3^rd birthday. Callan turned 3 on 2/12. That meant the next step was for him to transition to preschool, where he could continue receiving speech therapy, physical therapy and occupational therapy. And any other therapies he may need over time.

Today was his first day. And he did AMAZINGLY WELL. He let his teacher carry him in, he ate his snack, joined circle time, played instruments and used his signs to communicate countless things. No separation anxiety, no uneasiness. He was a complete champ.

If the pandemic wasn’t a factor, Callan would be in an integrated classroom with kids of all abilities. But for now, there are only 2 other children in his class, both who need services. We’ve had months of preparation for this transition – calls with therapists old and new, working with our coordinator to get the details down, helping to create a very comprehensive IEP for him, advocating for him as his parents as to what we see to be his strengths and areas to work on, and many emails with his new teacher updating his sign list, records and more. We even requested two brief meetings before he started so that he could become familiar with her. Otherwise, we’d be expected to have him walk into a new building with a complete stranger, since we’re not allowed in the building under current guidelines.

Let’s rewind a bit. Callan has had in-home therapy from the state since he was 6 weeks old. But with the pandemic, it’s meant virtual therapy for a full year. He hasn’t met any new people and has had limited social interaction. He’s mostly been with his Mom and Dad 24/7, as well as some quality time with his grandparents each week. And we also added his baby brother Stowe to the family last summer! Callan has had a lot to contend with and has thrived. What he’s achieved in the last year alone could take up countless blog posts. But by the time school was about to start, we knew he needed a change: more frequent services, more social interaction and the extra push from someone other than us each day to help him reach his goals.

Both times we took Callan to meet his teacher, he didn’t want to leave. He cried the entire drive home. That reaffirmed to us that he was ready for this new adventure. And that made my Mama heart a little less anxious, because starting school is a huge step, let alone at 3 years old during a pandemic and after a year of being mostly quarantined.

When we were told Callan’s prenatal diagnosis, we knew he’d have obstacles in life. Maybe more than others. We didn’t know what they would look like because every child is different. But regardless of the challenges he faces, our goal has always been to raise him to be resilient and as independent as possible. Today, his teacher met him on the sidewalk with his favorite ball. Before long, he was playing and she offered to bring him in. She scooped him up and off they went into the school. HE NEVER LOOKED BACK. I still can’t believe it, but deep down, I think I knew that would be the case. That independence we’ve fostered his entire life? I didn’t expect to see it show up at such a young age, in such a hit-home kind of way. I’m a bit taken aback, but so incredibly proud.

I could fill this post with cliché after cliché about how a Mama feels when her “baby” grows so fast and takes these monumental steps in life. And they’d all be true. But for me, those emotions are heightened and feelings of pride extra special because of how hard I know Callan works every single day. Since the day he was born, Callan has been inherently a fighter and the most determined person I know.

Yes, we’ve done a lot of work over the years to get Callan to this point. But the truth is, we’ve simply shown him what he was capable of. At times he needed an extra push or more encouragement. Or to be told he could do hard things. And for all of those – we were happy to oblige. But this triumph is his and his alone. It has to be. He needed to do the big work today. He needed to be ready. And he was. ❤

Dear Mom Letter

IMG_8836[189] Photo: Copyright House of Kosi

Disclaimer: This is our journey. The medical community instilled a great deal of trauma and fear in us about Down Syndrome, which I think impacted how we handled our particular situation. Your journey and community may be entirely different and I hope that’s the case. But regardless, most parents with this diagnosis I’ve talked with share similarities in how they processed the news. And I’ve learned that sharing your personal story can help others, especially the most raw and difficult parts.

Dear Mom,

If you’ve just received a Trisomy 21 diagnosis and feel the need to grieve – allow yourself to. You need to and have a right to. Don’t let anyone tell you differently. Let yourself feel all the emotions, even the ones you’re scared of. There will be many.

The unexpected and the unknown can be debilitating. Rely heavily on your support system. Be honest about your feelings with those closest to you. And tell them what you need. Even if you don’t know what that is, let them sit with you while you cry. In my case, I had one friend who left her kids at home and drove an hour to my house to make me breakfast from scratch. Others let me cry over dinner. My family took walks with me, got me out of the house and kept me busy when I needed it most. And we ordered takeout when I didn’t want to be that person crying in public yet again. Are you noticing a theme? I cried A LOT. But my support system lifted me up when the heaviness of our situation threatened to keep me on my knees. Because honestly, at times facing a diagnosis with unknowns can and will feel bigger than the strength you think you have to lift yourself back up.

Nothing will prepare you for the stress of this time. You’ll be sad. But you’ll realize soon enough that it’s not quite sadness at play – it’s the enormity of the situation, the sheer unknown, debilitating fear and worry about your child’s health, and the unimaginable anxiety about what is to come.

Share the emotional load with your husband or partner. They’re feeling it all too and may be processing it the same way – maybe differently. Have the tough conversations. Sit in silence if you need to. And wipe each other’s tears. Check in with each other daily and often. We grieved for a while until I caught myself for the 3^rd time saying, “I don’t want to be sad about our boy.” It was in that moment we both realized we didn’t have to be. It was our choice to make. And he deserved for us to be positive, to choose bravery, to choose happiness.

You may not want to hear it (I didn’t) – but it WILL be okay. Hearing that felt like a knife in my windpipe during that time, because I honestly didn’t know if it would be. And everyone who said that to me, had never been in my shoes and couldn’t possibly understand how I felt. It was too soon and I didn’t have the capacity yet to think that way. But looking back? I now know that it was true. Your baby will be perfect and what you never knew you needed. You’ll even have a greater appreciation for everything because of all you’ve overcome to get to where you are.

I’ve said it before, but if back then I could’ve had just a momentary glimpse into our present day life, it would have eased so many emotions and prevented a great deal of trauma. But it would have also changed my journey. I know now that I needed to work through every single emotion. It was part of the process and the beginning of my personal motherhood story.

Over time, you may also feel some guilt. Guilt that you were ever sad or fearful. Guilt that that somehow makes you a bad person or mother. Guilt that you should never have felt a certain way about the diagnosis or your child or the situation. STOP THE GUILT. The truth is that as hard as your experience may be now, it’ll help shape you into a more incredible mom. So be proud. Of you, of your baby, of your journey. Every part of it.

Dear Mom – you’ve got this.

Read more about our diagnosis story here.

Where I’ve been…

Ironically, I posted in March 2019 about an unintentional break from the blog. That break was only for a month or so. And now here we are, a full 10 months since my last post. Again, not intentional but I think we can call this one a legit break. But you know what? Sometimes life takes precedence.

For those who don’t follow my social media attached to this blog (which I have kept up), you’re probably wondering where I’ve been. There are many reasons I’ve not been writing and they all kind of snowballed quickly.

Not long after my last post, the most debilitating case of vertigo hit me thanks to an extremely stressful travel experience, the pressure changes of flying, plus being susceptible to it. I’ve had it twice before but never this severe. It impacted every single part of my life. I became a shell of the person I am and struggled to still manage LIFE. I missed only a week of work but still worked through some incredibly hard symptoms and horrific days. I quickly realized that work and my day to day was about all my brain could handle. I had no brain power left for creativity outside of that.

And so…the blog fell away.

I’d go weeks with symptoms then weeks without. And it’s those weeks without where I chose to focus on and really enjoy my life and the moments when I was well. Plus it was summertime at that point, so I focused on my health, family and favorite time of year.

Then? I got pregnant with baby boy #2 and as all the mamas out there can attest – my brain became even more mush. I struggled from the beginning thanks to hormones and all the shifts your body makes even more quickly the 2^nd time around – anxiety, fibromyalgia pain with no relief, migraines and vertigo flares. One of those alone is too much but pile them together and add in the worry you have in early pregnancy, plus caring for my toddler – it just about did me in. I was mentally and physically exhausted – and still am – but just starting to feel a bit better overall despite the vertigo still making its presence known to this day.

I’ve thought about this blog constantly during my time away. I have a lot to say but sometimes think I put too much pressure on myself to have these largely impactful posts. That’s kept me from posting too. I’ve come to realize that that’s not always going to be the case. And I need to be okay with that, give myself some grace and just go with it. So here I am, back at it. No promises, though, for how often I’ll post or if I’ll take another break. We’ll see!

Bottom line, writing here is therapeutic for me and I do think some of what I share can possibly help others. I may not have many followers or readers, but I’m determined to keep this going for me and maybe that one person I may reach. I won’t have a set posting schedule or expectations, but I do have a lot of posts planned and hope you stick around to see what’s to come.

World Down Syndrome Day 2019

Photo: Copyright House of Kosi

Today – 3/21 – is World Down Syndrome Day. The date was chosen to represent the 3 copies of the 21st chromosome (Trisomy 21), the 3rd of which makes our boy extra special. It’s not just a day for awareness, but to recognize and celebrate the incredible people who have T21 and who make our lives all the better for it. The world wouldn’t be the same without them.

I’ll be honest, I wasn’t sure I’d post about this day. And here’s why…

While Callan is still so young, I find myself walking a fine line of wanting to raise him to be aware of his condition, but not letting it define him or be the main focus. Because it’s not and it really shouldn’t be. It’s a part of him, but not what makes him who he is. That being said, I also realize the importance of him accepting every part of who he is, and so…

Here’s to T21:

To inclusion and empowerment
To positive awareness and equal treatment
To breaking boundaries and stereotypes
To limiting fear and invoking hope
To proving that joy shines much brighter than the obstacles and tough moments

And to our boy, our brave warrior…we celebrate you each and every day. We always will. But it’s a day like today that reinforces just how incredibly proud we are to have you, to know you, and to watch you make this world a better place.

An unintentional break

Photo: Copyright House of Kosi

This is the 1st time I’ve caught Callan sleeping like this. Documentation is required – obviously. Why does finding your baby like this tug at your heart so much? It hit me harder than I expected…seeing him so peaceful. Because the truth is, he’s had a really rough week.

You may or may not have noticed (likely not lol), that I took a break from the blog the last 6 weeks or so. It wasn’t intentional. And it was really for no other reason than I simply had no extra brain power to do it. Between Callan’s birthday month, first birthday celebrations, unending appointments, work, obligations, being sick for 3 of those weeks and just – life – I decided to slow down a little and soak up the day to day instead of putting pressure on myself to share when I wasn’t really feeling it. It is what it is, right?

So…this week. It was physically rough for Callan but mentally exhausting for me. And I’ll preface this by saying – trust me – I know things could be worse. I count our blessings every moment of every day. But that doesn’t mean Callan doesn’t go through hard moments or that they aren’t stressful or traumatic for us.

Children with T21 often have thyroid issues and are at an increased risk of childhood leukemia. So we monitor his thyroid and CBC closely because of this. On Monday, I took him for his 1 year bloodwork. We have yet to have a good experience with bloodwork. Multiple people who can never find a vein and it’s just traumatizing on every level. Previous recommendations for “the best” haven’t panned out so I went straight to the children’s hospital this time. The good part? The phlebotomist got a vein on the 1st try and filled 3 vials in under a minute. The bad news? I had to hold him down while he screamed out of fear, shock and pain. But although he was upset, he did great and recovered quickly. Much quicker than me.

He needed further testing based on his Monday results and so Wednesday it was back to the same chair. Bloodwork TWICE IN TWO DAYS. We had no choice. His CBC was normal (thank goodness!) but his thyroid levels were off. At his age, thyroid not functioning correctly can impact growth and development among other things. They wanted a handle on this ASAP. Same phlebotomist. He took one look at her and knew what was coming. He looked up at me in sheer terror. He flailed and squirmed so badly I had to use all my strength to keep his body steady and my poor mom had to hold his head. I felt completely gutted doing this in the first place but twice in two days was just awful to say the least.

Results of additional tests so far are ok but we need to follow-up with a pediatric endocrinologist soon. Based on my personal experience and history with thyroid issues, I’m optimistic that we’ll manage what comes our way. But I also know how much it can impact daily life and overall health, so I’ll be a bit anxious until we get more answers.

But for now? I watch my baby sleep peacefully, at a loss for words when I realize just how much he lives up to the meaning of his name…and in complete awe at just how incredibly brave he is.

Our T21 prenatal diagnosis

Photo taken @ 19 weeks pregnant with Callan

With Callan’s 1st birthday looming, I’ve been thinking A LOT about my pregnancy, our diagnosis journey and everything that came with it. That time of my life feels almost like a war zone. Certain memories are hard to look back on, to articulate just how intense and painful they were. And they’re even harder to face again knowing what I know now and living this life with our incredible baby. For obvious reasons, this is probably one of the most difficult posts I’ll write. It’s raw, it’s authentic, it’s emotional. Here’s our story…

At our initial prenatal appointment, we were inundated with information. Prenatal testing was mentioned, including two different types of testing via bloodwork – the less intensive version that tested for chromosomal abnormalities and a more intensive one that tested whether we were carriers for a slew of what seemed like terrifying conditions. My husband and I discussed it at length and since the less intensive one seemed fairly common, we agreed to do it.

We had the blood work done at 13 weeks. And to be honest, although I knew what the bloodwork was for, Down Syndrome (DS) was NOT on my radar in the slightest. Why would my baby be anything but your average healthy baby? How could he possibly have a chromosomal abnormality? Why wouldn’t my 1st pregnancy be anything but bliss? It may sound naïve, but I don’t believe any mother would think otherwise. We waited two weeks for the results. Then at 15 weeks, my phone rang while I was home alone. My midwife called and emphatically said (almost yelled), “BAD NEWS, you tested high risk for Down Syndrome.” My heart started pounding visibly out of my chest, I couldn’t catch my breath and I became unsteady. Tears welled in my eyes until I couldn’t see beyond them, and as they fell, she asked if I wanted to know the sex of my baby. Although we hadn’t decided yet I said yes because in that moment I needed something positive to cling to. I needed to know who my baby was.

For 7 weeks we saw specialists and both researched extensively. My husband is a statistician and spent day and night going over the scenarios and percentages again and again. The thing was, NO ONE could tell us what our exact chances were. It was all guesswork. We saw one genetic specialist in particular who we both despise to this day. (It says a lot that another genetic specialist recently apologized for that doctor and how he handled our situation on behalf of the profession.) He had zero empathy, couldn’t speak to the numbers or explain anything we asked, and talked over the genetic counselor. Unthinkably – every time I’d ask a question – he would mention termination. In fact, in a week’s span I was asked at least a dozen times if I was keeping my baby. I get that parents have options and doctors need to inform them of what those are. And I will never ever judge other parents for their decisions in these situations. But here’s the thing – we NEVER asked about it. We had made it clear from the beginning that we were keeping our baby. I left every doctor appointment and hung up every phone call a shaky, sobbing mess. It was such a trigger for me. Why couldn’t anyone understand that this was OUR BABY involved? The last time someone from the midwife office asked me, I completely lost my sh**. I screamed at her, I cursed at her, I told her to put in big f’ng bold letters on the front of my chart that we were keeping our baby, he was worth it and don’t f’ng ask me again. Not my proudest moment but at the same time, it was, because I/we seemed to be the only ones fighting for our baby. We made it to a couple more appointments with that practice but it became quite clear that they were far from equipped to handle the potential of a diagnosis, let alone the reality of one if that was to be the case.

I’ve been through a great deal in life but nothing, I mean nothing, compared to the stress of those weeks. I borrowed a doppler from a close friend of mine so I could listen to Callan’s heartbeat whenever I wanted to. It’s not something to rely on, obviously, and I knew that. But in the midst of so many unknowns, hearing his heartbeat was reassuring and what I needed. At 18 weeks, I have a video of the doppler that captured both of our hearts beating together. As one. It was a pivotal moment for me. A reminder that I was his and he was mine. We were in this together.

By week 22 after exhausting all of the possible providers, asking thousands of questions and weighing all of the risks, we decided for my sanity and well-being, to go ahead with the amniocentesis. Despite witnessing my cancer battle and daily struggles with chronic pain, nothing prepared my husband to see who I was at that point in time. He was admittedly, extremely concerned. I was mentally and physically exhausted on every level. Above all, we wanted an answer so we could properly prepare for our boy. And we wanted to be able to emotionally deal with the diagnosis so we didn’t have to do so after his arrival. We weren’t too trusting of the doctors at this point. But the one who performed the amnio I am still grateful for to this day. She was kind, she was gentle with us emotionally and promised to be the one to call with the rapid 3-day (FISH) results. She made good on her promise and personally called a few days later. I took the call in my kitchen. I was home alone again. Our boy had Down Syndrome – Trisomy 21 to be exact. I fell to my knees, curled up in a ball and cried harder than I ever have in my life. The gut-wrenching grief kept me on the floor until my husband could get home from work.

We sat in silence for hours. What could we say? Looking back, now I know we were in total and complete shock. We knew nothing about DS. And we knew no one with a baby with DS. With the sheer number of people and children in our lives that DIDN’T have it, I definitely did ask why me or why us. I wondered if there would ever come a time where I’d look at other babies without asking that. As hard as that is to admit, I think that’s a normal part of the process.

We coped day by day. We both dealt with it differently, but were cognizant of that and checked in daily. We were open with all of our feelings – even the tough ones. By night three of crying myself to sleep, I sobbed into my husband’s shoulder for the final time. I said, “I don’t want to be sad about our boy.” And right there I could tell I had made a shift in how I was coping. We agreed from that point forward, we wouldn’t be. We would do what we needed to ensure positivity was wrapped around this new life we were bringing into the world.

We started sharing the news with those closest to us. The following weeks had lots of tears. At home. In public. I cried a lot. And let me be clear – it wasn’t sadness by this point. It was the enormity of the situation, the sheer unknown, debilitating fear and worry, unimaginable stress and anxiety. Family and friends rallied around us, lifting us up. At first that was hard because many said it will be okay. No one else had been through what we were going through so how could they know that? I can’t blame them. I would’ve probably said the same thing. Initially, I just wanted someone to tell me it may not be okay but that it was okay to grieve. But that was something we needed to do on our own, in our own time.

As the weeks went on, the initial shock wore off. We dove into research once again, this time doing everything we needed to adequately prepare for our boy. At the top of the list? A new doctor. We left the midwife practice. (I’m sure there are fantastic ones out there but our experience didn’t pan out that way.) We were now deemed high risk so we went with the most highly recommended doctor around. BEST decision we could have made. We loved him. He was easy going yet obviously confident in handling our situation. We were comfortable from day one until the day I gave birth. Next on the list? ENJOY THE PREGNANCY. We deserved that. Our baby deserved that. From then on, that was our focus.

Beyond our closest friends and family, we also didn’t feel the need to tell anyone Callan’s diagnosis. We started to view the diagnosis as simply a health condition (like asthma for example). We knew he’d have some challenges but it absolutely would not define him or who he was in any way. We didn’t even share with most people after he was born. And before I started sharing our story publicly, no one ever asked so we never brought it up. It wasn’t a secret. We just didn’t need to mention it. Now I do sometimes just because I’m so stinking proud he’s mine and of all he’s accomplished!

So to the parents who have just received a diagnosis or find themselves in a similar situation, I will tell you the one thing I wish I would have known then. A Down Syndrome diagnosis is not a devastating one. While you’re in it, yes it feels like the end of the world. Everything is shattered. But now, with a year of being Callan’s mama under my belt? All I feel is pure joy. Yes, there are hard times and some trials but that’s true of any 1st year of motherhood isn’t it? Every kiddo comes with their own circumstances. Back then all I could do was hope for how things are now. If only I could’ve seen it.

I’ve often cried when I look at my sweet boy’s face and think, “How could I have EVER been sad about you?” I remember holding him as a newborn, tears pouring down my face, saying that over and over again. It shatters my heart that I was sad at all, because just having a tiny glimpse into our life now would’ve instantly calmed my fears while pregnant. Although no parent would ever wish a diagnosis or any amount of struggle on their child, I honestly wouldn’t change our path. I wholeheartedly believe that Callan is who he was meant to be and that we were chosen to be his parents for a reason. I am forever grateful for him, the type of mama he has made me and the person he is helping me become.

How I stay healthy – what I eat and how I move

NOTE: This is simply my story and how I live to feel my best. What’s best for you may be entirely different! Also, I talk about weight here but don’t get hung up on it. It’s not about that. It’s about making the commitment to take control of your health.

About 4 years ago, I was at the heaviest I’ve ever been – 30 pounds heavier than I am now. I even weighed more than I did on the day I gave birth to Callan. I didn’t mind how I looked, but I was uncomfortable. I remember wearing that bridesmaid dress and tugging at it the entire night. My confidence was at an all-time low. I think everyone has a weight or size where they feel most confident. If that’s lean and strong, great! If that’s softer and thicker, great! At the time, I was working out 4-5 times a week, eating healthy and even doing meal replacement shakes. But nothing was working. I was also sick ALL THE TIME. Constant massive sinus infections, colds, viruses. I even caught BOTH strains of the flu that came through my area – within a two month span. Something had to give.

The dairy/immunity link
I met with a naturopathic doctor and one of the first things she suggested was that I give up dairy. The thought of that was ludicrous to me. I ate dairy every day, at nearly every meal. I put cheese on everything and lived for ice cream. I actually laughed because I truly believed there was no way I could ever do that. She said my immunity likely depended on it and with how sick I’d been, I decided to give it a shot. It wasn’t easy. I made small changes at first – cooking with dairy-free butter, using almond milk creamer in my coffee. I made more changes over time and it got easier. After the initial dairy detox, I learned that I could sneak some dairy here and there. I don’t do it often, but let’s be real for a minute. I’ve tried every dairy-free pizza there is, but if I want pizza, I go for the real thing. Or when my husband comes home with tiramisu – you can bet your ass I’m devouring that.

So what happened once I nixed dairy? My immunity skyrocketed and the weight started to come off more easily. Everyone is different but it’s obvious my body knows it’s not good for me. One question I always get asked is how I get enough calcium since I don’t eat dairy. My response? You don’t need dairy for calcium. That is a perpetuated myth. It can be found in lots of other foods. And even many non-dairy substitutes are often packed with it. For me personally, I get more than enough through supplements as I outlined here so any additional calcium from my diet is just a bonus.

What I eat
There is no label for how I eat, though if I had to choose I’d say I am mostly pescatarian with vegan tendencies if that makes any sense at all. Related note – I despise the word ‘diet.’ I’m a firm believer that diets don’t work, but lifestyle changes do. That being said – I don’t just avoid dairy. I also follow these ‘guidelines’ that I’ve adapted over time:

No meat. I haven’t had it for over a decade now. For no other reason than I just never liked it. I DO eat some seafood and have fish 1-2x a week.
Limit gluten/bread to a couple of times a week.
Limit soy. Soy of some form is in nearly everything it seems. My doctors had told me early on in my cancer battle that soy can impact hormone function which isn’t a great idea in general, but with my thyroid issues, that’s not an option for me. I’ll have some soy-based meat substitutes at times, but I try to avoid it for the most part.
No processed or frozen foods/meals. If I can’t pronounce or don’t recognize ingredients, I don’t eat it.
Limit pasta. If I do eat it, I opt for versions made with quinoa, chickpeas and/or brown rice.
No fast food. There aren’t many options for me anyway but a lot of ingredients are not clear cut. And things like fries are often cooked in beef flavor/fat/oil.
No soda of any kind. I used to drink one diet soda a day and never thought I’d break the habit but it was SO easy to nix. I don’t even miss it.
No excess sugar and also don’t drink sugar (like fruit juices) often. If I want something sweet, I’ll treat myself every so often.

It sounds strict, but it’s really not. I eat what I want, when I want. Today, for instance, I had both a green smoothie and vegan chai cupcake. Balance, people. I just eat in moderation and try to make healthy choices overall. I also graze. I eat a lot but I do so throughout the day. And most importantly? I give myself grace. If I have a poor day of eating, I simply start fresh the next day. And I allow room for treats. I have a big sweet tooth and know that if I don’t allow them, then I’ll be in the pantry at midnight elbow-deep in a box of cookies.

I’ve talked to so many people who say they could never eat healthy or eat like I do. You don’t have to! But you should eat for wellness. Is the food really worth it if it makes you feel awful physically? If it’s literally making you sick? If it’s keeping you from reaching your goals? To me, feeling healthy overall is worth making some changes and sticking to them. Find what works for you.

How I move
Like I mentioned here, I do what I can, when I can. It’s not easy for me by any means. I’m a mom now and exhausted for obvious reasons. I don’t sleep well in general. My thyroid is still never regulated which also lowers my energy. And on top of that? I have fibromyalgia, which I’ll talk more about at some point. I’m in pain every.single.day. For me, it means I need to move to feel better, even though it hurts to move at times. And yet, the more stationary I am, the more pain I’m in. Working out can help but it can also cause flares, spasms and more pain. It can be a vicious cycle that leaves me unmotivated to move. BUT despite it all, I still try to workout 3-4 days a week.

I was diligent in staying active throughout my pregnancy. I was lucky in that I was able to feel well enough overall to do so. Even on the days that I didn’t want to budge, I always felt better after I moved. That being said, I listened to my body and if I needed to rest then I did. I kayaked (holding onto strangers’ docks thanks to nausea lol), swam, did yoga and walked. Now, I do the same, sticking with low-impact workouts for pain management. I simply feel better when I do. Yoga will always be a favorite and I swim all summer long. I walk and do some strength exercises whenever I think of them – found moment workouts, if you will. Leg lifts while brushing my teeth or cooking. Ab work while the baby is playing next to me on his play mat. Squats while on conference calls. Whenever you THINK of working out, DO it.

Is it easy to workout often with a baby and everything else I have to contend with health-wise? Nope. But it’s important to me that Callan know how vital it is to prioritize health and wellness. That he knows he’s my why, not my excuse. And bottom line? A healthy, happy mama = a healthy, happy baby.

If you’re still reading at this point, I’m impressed. Now it’s your turn. What do you eat and how do you move to feel well?

Don’t wait for a new year to be who you want to be

I admit I like the thought of a new year and a fresh start. A reset of sorts. New year, new you, right? But what I don’t like? The pressure to reach nearly unattainable goals and unreasonable expectations. I’ve seen person after person set themselves up for ‘failure.’ I’ve been a gym rat at different times in my life and always dreaded the month of January. The gyms become overcrowded January 1^st, but by the end of the month? Everyone has cleared out. Sure, there are people who stick to their resolutions, but it’s not easy.

We are all works in progress. There are always areas I’d like to improve, things to do better, goals I want to achieve. And I truly believe you certainly don’t have to wait to the start of a new year to become who you want to be. So for me, I never set resolutions at the start of the year. Instead, I work on reaching goals day to day throughout the year.

If you haven’t picked up on it from this blog or my social media account yet, I’m quite health conscious. I have to eat well and be active in order to feel good. I’ve made lifestyle changes over the years that I’ve been able to adhere to. How? I follow these principles, which would be helpful to try when making resolutions:

Start small. Make one change at a time. Start cooking with non-dairy butter, for example. If you try to change too much at once, you’re setting yourself up for failure. You simply won’t be able to maintain it all.
Be specific. If you make a general resolution, you’re not going to be able to achieve it or stay motivated. Saying, “I want to lose weight” is not feasible. How much weight, by when, and how are you going to do it? Set specific, measurable goals for yourself.
Make changes gradually. And know they will take time.
Allow room for setbacks. They’re bound to happen. Over the holidays I ate too much junk and I certainly felt it. And just yesterday I felt worse during and after a workout than I did before, and got really frustrated until I reminded myself every day will be different.
Avoid the scale for the most part. Go by how you feel, not a number.
Get support when needed. My husband is the one who puts everything in perspective for me often.
Reward yourself. Are you seeing progress? Get a new outfit you feel confident in. This can help keep you motivated to reach your next goal.
One moment doesn’t erase all of your progress. I know I won’t always find healthy food options while out. It is what it is and you can’t beat yourself up for it.
Do what you can, when you can. I know I won’t find time to work out every day. But I can certainly build movement into each day. Squats while cooking or holding the baby. Leg lifts while waiting for the dog outside. Ab work while the baby plays on his mat. ANYTHING! It adds up. Trust me.

All this being said, I’d love to hear your thoughts on resolutions. Do you make them? Do you despise them? Do you take my approach to setting goals throughout the year instead?

4 minutes…a milestone reached

Photo: Copyright House of Kosi

I have so many topics I want to write about. So many posts planned.

But today I’m writing about something I didn’t think I’d be writing about at the moment. Milestones. Expectations. Goals reached. Pride. The baby is now sleeping and I felt compelled to document our day.

At 10 ½ months old, Callan sat unassisted today for more than 4 MINUTES. Up until today, he would sit for a few seconds max and fling himself backwards hoping someone would catch him. Not the safest approach! We’ve worked – he’s worked – incredibly hard on this skill for months now. It’s his least favorite because it takes a great deal of effort, he gets frustrated, it’s uncomfortable and for a kiddo with lower muscle tone in his core – it’s freaking hard, simple as that. One of our physical therapy goals was to have him sitting unassisted by his 1^st birthday, which is less than 6 weeks away (that knocks the wind out of me to even write). Of course I believe he can accomplish anything, but the irony is that just last night I said to my husband that I didn’t think we’d reach that goal. Why? Because while I knew he could sit for longer than a few seconds, he didn’t WANT to.

If you take anything away from my writing, let it be the one thing I’ve learned as a parent of a child who needs extra help in some areas: They’re not going to learn if you keep them comfortable. Kids like comfort. Can you blame them? But discomfort leads to accomplishments. I suppose that’s true for life, isn’t it? So every day we’ve worked with Callan, using techniques we learned in therapy but also other tricks we’ve learned along the way. And sometimes, tears were involved. If he didn’t catch himself and got startled. If he was just over the exercise. We’ve also worked on comforting or rescuing him (when working on skills) only when he’s truly upset or scared, not when something is hard. And if he’s upset because something is hard, we give plenty of reassurance. He’s come SO far with this skill. He recovers quickly now and it’s become apparent to those closest to him as well. As his mom, it’s the absolute worst to see him upset, but I also trust that he’s learning the skills he needs to cope in these situations.

When I realized he was sitting for more than 30 seconds today, I took this photo. Then I started recording. More than 1 minute later, I abandoned the video to take it all in. More than 4 minutes later, the shock turned to tears for me. Watching your baby learn and grow yields such complex emotions for any parent. But watching your baby accomplish something that’s taken such concerted extra effort day after day after day after day? And to suddenly do it like it was no big deal? My pride is indescribable. He wobbled a bit then didn’t even fall – he lightly moved to the side then rolled to his belly smoothly – another accomplishment. I scooped him up as tears poured down my face. And I told him what I tell him every day. “I’m so proud of you. I’m so proud to be your Mama. You are brave, you are strong, you are smart – you can accomplish anything.” I just am in awe of him. Of what he can do, how he overcomes obstacles, his ambition and fighting spirit that are already palpable.

The physical and cognitive abilities of babies with T21 are not predictable. Like every other person in the world, every child with T21 is different. At our genetics appointment recently, the counselor said something that stuck with me. He said, “Einstein has the same number of chromosomes that I do. But I can guarantee you we do not have the same intellect or physical abilities.” And he’s right. Callan may have an extra chromosome, but he also has his own unique set of abilities. While we push him to attain what are deemed appropriate milestones within a certain age range, we place no strict expectations on him based on other children and where he “should” be in comparison. We push him to reach HIS potential. Plus, he’s quickly taught us that he’s going to reach milestones at his own pace anyway, when he’s good and ready.

I think milestones in general are a tough concept. I have a difficult time believing every child should reach certain milestones in the same timeframe. How is that even feasible with how unique each child is? That being said, I admit it has been hard at times to see babies Callan’s age who are already sitting up, crawling, pulling up, etc. I never ever play the comparison game, but just last week I had a moment of feeling like we weren’t making progress. I swear Callan is in my head and hears my thoughts because as soon as I start to let the worry creep in, he pulls out all the stops and shows off a new, epic skill. He’s like, “Oh yeah, Mama? Watch this.”

I should note that today is a Friday. I recently made the transition to a shorter work week with Fridays off so that I could get more time with Callan. Days like today prove yet again why that was the best decision we could have made. These are the moments that we work toward, and why it’s so important we get extra time. These are the moments that I want and need to be with him for. These are the moments I live for.

Christmas décor & ornament DIY

The holiday season is one of my favorite times. There’s a lot to look forward to, between my birthday, Christmas, traditions, quality time with family and some time off. We’re in full Christmas mode over here so I thought I’d take you through some of our Christmas home décor, our favorite ornaments and a simple DIY you can make today. It would be perfect if you’re looking for a last-minute gift with only 3 days to go until Christmas.

Confession – I’ve never had a real tree before. That may seem odd to some, but I grew up having an artificial tree and it’s what I know. Plus, the smell of pine gives me an instant headache so artificial has always been the best option. I usually start decorating the week of Thanksgiving so I have 6 weeks or so to enjoy it all. Most of it is centered in our living room, but I put something in nearly every room – small little trinkets, Christmas lights, signs. The baby has his own tree in his room too.

When we bought our house, there were basically two tiny living rooms joined by a door. The design made no sense. Someday I’ll share the before and after in its entirety but let’s just say there was farm animal wall paper and carpet holding so much dirt and allergens the water was still black after 4 steam cleans. We started over – ripped out the floors, knocked down the adjoining wall, installed a beam, whitewashed the fireplace and added customized woodwork on the bottom half of the walls throughout, since it already existed in one of the rooms. Now we have one large open living space. We have an area for Callan to play and have his therapy appointments comfortably. And we now also have the perfect spot for our tree.

The Christmas tree was my birthday gift this year. It’s snow-covered, pre-lit with warm lights and so so so beautiful in person. My initial goal was to get a galvanized tub to put the tree base in. I started the hunt for one more than 3 years ago. I wanted something vintage and keep checking antique shops to no avail – which is probably because it’s suddenly everyone’s plan. But for now, the tree collar does the job.

We kept the ornaments simple this year, mostly including those that hold special meaning for us. Here are a few:

Callan’s pregnancy announcement

Where we got married

Obligatory 1st Christmas

Our pup, Shea

From my Memere

Let’s talk this birth announcement ornament I made. I’ve been making these for loved ones for special occasions for probably a decade now. Weddings, baby showers, birth announcements – you can really do it for anything you want to keep as a memento. And it’s so easy! Here’s a brief how-to:

Buy plastic craft ornaments (or glass if you don’t break everything like I do).
Cut your invitation or announcement into skinny strips. Tip: If there is an image you want intact or text you want to read in full, then cut accordingly. For a birth announcement, cut out the name, birth date, weight, etc.
One at a time, take each strip and wrap it around a small pen or pencil. Hold it tight for a few seconds. Let it go and you’ll have these pieces that resemble curled ribbon.
Fill the ornament with the curled pieces, making sure the images/text you want to see are visible.
That’s it!

Another tip – you don’t have to do this only for a special occasion. Keep it simple by using patterned or different colored paper to create unique ornaments. If you happen to make one, I want to see it!

I hope you all have an amazing holiday season filled with the moments that matter. Thanks for joining me on this journey so far. We have lots more to come in 2019!